Please help strong pulsing sensation mid back and radiating

[Aylasnan]

I have a strong on and off pulsing sensation through out my back. Starts mid back and radiates out. Does anyone know what this is? I've had it before but for the last couple of days I've been getting it regularly. Currently waiting for biopsy of nodules on both lungs. Have long rhinitis history. Also hard lumps under skin over body. On and off body pains. Tingling hands. Coughing up blood for 10 weeks.

[Birdie]

I have a strong on and off pulsing sensation through out my back. Starts mid back and radiates out. Does anyone know what this is? I've had it before but for the last couple of days I've been getting it regularly. Currently waiting for biopsy of nodules on both lungs. Have long rhinitis history. Also hard lumps under skin over body. On and off body pains. Tingling hands. Coughing up blood for 10 weeks.

Good morning Aylasnan,

It's monday, did you get your test results yet? Inquiring minds want to know!

None of us are doctors BTW, we can only clue you in as to what we've experienced. Oh, and yes I've had all of the symptoms you're describing. They were all due to Wegeners but they could also have other explanations. If you have WG it can be treated. So relax and walk calmly out of the theater (contact your doctors or go to the emergency room)...

If it's Wegeners then it sounds to me as if it's very active. Treatment will make it stop very quickly. In my case it was 20 minutes. Within 20 minutes of taking the medication I was feeling very well. Within six months most of the damage done (while figuring out what was wrong) had been reversed. So hang in there. You sound a bit panic'd? No need to be. You're in a developed nation with good health care (even if there are complaints about it) so you'll be fine once they know what's wrong and take care of it.

The Ice Cream man

[annekat]

Good morning Aylasnan,


If it's Wegeners then it sounds to me as if it's very active. Treatment will make it stop very quickly. In my case it was 20 minutes. Within 20 minutes of taking the medication I was feeling very well. I would not expect to feel very well within 20 minutes of getting initial treatment for an active case of WG. Was this with an infused very high dose of prednisone, or something of that nature? Then again, everyone is different.

It is very true that you just need to keep calm, find out, and then get with the treatment ASAP, without worrying about side effects and the like, and you WILL get results. The proper meds will stop the progress of the disease. You may then be dealing with residual effects for a long time, and need to keep taking some meds, but you will have saved yourself from the worst of it.

[drz]

A high dose of steroids can affect you rather quickly but healing takes a lot longer. Once my tongue swelled up from an allergic reaction to antibiotic and the steroids and Benadryl injections they gave me reduced the swelling within minutes.

[Birdie]

I would not expect to feel very well within 20 minutes of getting initial treatment for an active case of WG. Was this with an infused very high dose of prednisone, or something of that nature? Then again, everyone is different.

Is 80mg of pred a high dose? That's all it took to pump up my metabolism and stop the pain. I regained use of my hands, could walk normally, talk without pain, even eat solid food. Within a few days my gums had recovered enough that my teeth were less loose and bleeding in my mouth had completely stopped.

The result of prednisone was a bit misleading since nobody told me what was going on and I had absolutely no experience with such things. It took a couple months of hard research at ASU's medical library to learn what I could have learned in a couple days here.

[annekat]

Is 80mg of pred a high dose? That's all it took to pump up my metabolism and stop the pain. I regained use of my hands, could walk normally, talk without pain, even eat solid food. Within a few days my gums had recovered enough that my teeth were less loose and bleeding in my mouth had completely stopped.

The result of prednisone was a bit misleading since nobody told me what was going on and I had absolutely no experience with such things. It took a couple months of hard research at ASU's medical library to learn what I could have learned in a couple days here. It's a high dose for oral pills, but not much higher than most of us got at first. It's nothing like what they'd give in infusions, I don't think... though I haven't had those and could be wrong. Did they give it to you in an infusion? I suppose that would make it act faster.

Your mention of getting a lot of relief from some symptoms within a few days sounds more like what I'd expect. It was the 20 minutes that threw me. But you were having some kind of specific pain that I probably wasn't having, and I could already walk normally and eat solid food. I think it's great that you could get relief from those things that fast with 80mg. of pred. It is truly a wonder drug, though many of us love to hate it.

[Birdie]

Did they give it to you in an infusion? I suppose that would make it act faster.

I showed up at the ER holding a recent biopsy indicating WG. The ER doc didn't know what it was. He looked it up and came back sorta white faced with all sorts of plans. He'd already called in several specialists and ordered 80 mg pred plus 150 mg cytoxin. The hospital protocols for starting the cyclo took hours but they gave me the pred immediately. I went from barely alive to climbing the walls (blood O2 was in the 70's).

[annekat]

I showed up at the ER holding a recent biopsy indicating WG. The ER doc didn't know what it was. He looked it up and came back sorta white faced with all sorts of plans. He'd already called in several specialists and ordered 80 mg pred plus 150 mg cytoxin. The hospital protocols for starting the cyclo took hours but they gave me the pred immediately. I went from barely alive to climbing the walls (blood O2 was in the 70's). Hmm... so it sort of sounds like you got it by infusion, and maybe the CTX, too, though those are normal doses to take via pills, as well. In any case, it sounds like the white-faced ER doc handled it very well, given his lack of any experience with WG, and got the right meds into you as quickly as possible.

[Debbie C]

The pain you are feeling is probably from your lungs. Have you been having a hard time breathing ? Plus coughing up blood doesn't help..wish you would go to the er

[Birdie]

Hmm... so it sort of sounds like you got it by infusion, and maybe the CTX, too, though those are normal doses to take via pills, as well. In any case, it sounds like the white-faced ER doc handled it very well, given his lack of any experience with WG, and got the right meds into you as quickly as possible.

No infusion, just pills. It wasn't the ER doc who handled it, he just did what the rheumatologist (AKA Mr. Wizard) told him to do over the phone.

[annekat]

No infusion, just pills. It wasn't the ER doc who handled it, he just did what the rheumatologist (AKA Mr. Wizard) told him to do over the phone. Oh! Well, it surprises me that you reacted to the pred that fast, but everyone is different. It has always taken me a couple of days to really start feeling pred, even at high doses, though the highest I've taken is 60mg. Of course, now, that observation is from way in the past, since I've been on some amount of pred continuously since April of 2011.

So were you then admitted to the hospital, where they continued to administer the oral pred and CTX, along with whatever else they might be doing? Or did you go home armed with your new prescriptions? I was just in the hospital overnight for tests, before my dx, even. It was suggested I had WG and I got in to my ENT right away for a nasal biopsy, which proved I did. I knew it anyway, because I'd already been on this forum, and my saddle nose appeared on cue right around that time. I was already on pred, and that was re-upped at 60mg. along with 100mg. of CTX.

I found the increased appetite on pred to be a positive thing. I was so ravenous that healthful, non-processed foods like veggies and brown rice tasted really good! I had already found that sugar could do me in, so I avoided it. And I even lost my desire to drink coffee during my initial treatment! I drank lots of water and herbal tea. I did not go out and buy junk food or anything that took a lot of time to prepare, just kept it simple with the veggies and rice and usually some eggs, tofu, or chicken thrown in for protein, and maybe some cheese. I'm not even sure how groceries got bought, in the shape I was in. I was always either in bed, or cooking, and then eating in front of the computer, reading the forum and being a lurker. Then it was back to bed, and the pred never kept me awake.

[Birdie]

Well, it surprises me that you reacted to the pred that fast

So were you then admitted to the hospital

I'm not even sure how groceries got bought, in the shape I was in.

Until right now I thought instant reaction to prednisone was normal. I was high as a kite orbiting the hospital in a wheelchair for a week after that. They didn't like it, nurses kept calling me a flight risk or escapee when they had to use my cell phone to find me.

You didn't know how groceries got bought and I could never find the groceries I knew I bought. I ate three times as much and didn't gain weight. I started three projects per hour around the house and finished none.

[annekat]

Until right now I thought instant reaction to prednisone was normal. I was high as a kite orbiting the hospital in a wheelchair for a week after that. They didn't like it, nurses kept calling me a flight risk or escapee when they had to use my cell phone to find me.

You didn't know how groceries got bought and I could never find the groceries I knew I bought. I ate three times as much and didn't gain weight. I started three projects per hour around the house and finished none. Interesting. It certainly shows how unique each person's reactions can be. I guess our metabolisms vary, too, and yours is such that it used up the extra calories very easily in dealing with your increased energy level, the starting of projects, etc. I remember another forum member describing being up all night cleaning and doing projects around the house when on high dose pred. It sounded like he tended to finish his projects, though. I'm more the type who would start and not finish them, though there'd be far fewer than three per hour. As for weight gain, I definitely had it, though not as much as some people, and it did diminish when I got to the lower doses. I had the moon face and the buffalo hump, though my PCP thought the hump was from osteopenia and I thought it was bad posture. I still have it a little. And any pred over about 15-20mg will make me crabby with people out in public, on the phone, etc., which isn't good.

So Aylasnan is getting quite an education about pred! She should try to just take it one day at a time, and she is just as likely to have middle-of-the-road reactions to it and the other meds and nothing too extreme.